The drinking game ‘I have never’ gives you the opportunity to find out your friends’ secrets. Everything and anything from steamy group sex encounters, to drunken antics and dirty habits. If you ‘have never’, you don’t drink. And if you have, you do. So we were holed up in a house in the middle of nowhere my friends and I, having fun. Until someone said
‘I have never wanted to kill myself.’
And I drank.
I remember the shock rippling around the group. I’m not the sort of person who is typically suicidal. I’m not bullied. I am down to earth, tremendously self assured, people’s opinions of me don’t bother me. I’m confident and happy.
But I have felt so trapped, so helpless, so powerless and so desperate that I have wanted to take a nice sharp knife and cut through my wrists. The smooth relief followed by thin burning as the blade cut through my flesh, watching my traitorous blood drain away.
Because it felt like the only solution.
You see, we live in a world of wonders, of medical miracles, of technological marvels. Living in this world brings with it a high expectation of solutions. There is always an answer, a way forward. So what do you when there isn’t? How do you cope when there isn’t an end to the pain?
The Incurable Disease
I was 18 when I first felt this ‘betrayal’ of modern medicine, after four years of trying to find a solution to being in pain I was finally diagnosed and was told there was no cure. They say that the mind dulls the memory of pain.
My mind is not dulled by the memory of my pain. Even now I struggle to write about it.
I experienced this pain over and over again, once or even twice a month. The pain was crippling. It made me vomit, empty my bowels, hyper-ventilate. I remember throwing my body around the bed, desperately trying to find a position which would make the pain stop. It never did. Only when exhaustion created a semi-comatose state could I escape from the pain, and hope it had dulled by the time I came around again.
I have the disorders known as Endometriosis and Adenomyosis. This condition frequently takes up to 10 years to diagnose because it is a gynaecological condition. It is taboo to talk about. Mention ‘that time of month’ and men – even doctors – duck and head for cover. They run away from me.
They run away from me.
It is considered normal for women to have period pain, that it is just something that we put up with, that it is all in our heads, that we are making up how hard it is.
My entire experience of being a women is tainted with pain. The regularity of my pain got worse as I progressed through puberty, but by my twenties I hated being a woman. I hated my body. My life was vanishing in the four walls of my bedroom, easily spending nearly two weeks of every month either in pain or recovering from pain.
The Struggle with Normality
There is nothing that can prepare someone for the enormity of living with an incurable medical condition, be it a painful one, a auto-immune condition, anything which impacts the body on a daily basis. There is little support out there. And if it isn’t a terminal condition, the psychological or emotional struggle isn’t considered.
It takes a long time to reconcile that living with a condition like endometriosis means not having a normal life. A LONG TIME.
We lose whole chunks of time, days at a time lost to pain and exhaustion. Yet we expect ourselves to still achieve everything that our friends are doing. As if losing that time is irrelevant to our goals, as if we can catch up, or make up for the time. We can’t.
We watch our friends achieve so much, passing exams, getting great jobs, starting families. It is really hard to even consider, let alone accept that we can’t achieve those things, that we can’t operate in the same zone as everyone around us.
I felt like a failure for many years because I hadn’t got the right grades, I didn’t have a career, I didn’t get the mortgage and all my friends were streaking ahead.
It never even occurred to me that the reason I ‘failed’ was because I was trying to win a battle to want to stay alive.
When I received my diagnosis I finally knew what was wrong with me, I had a reason for the pain that I was in. But I had no inkling that living with an illness means a normal life was completely out of my reach.
No-one sat down and said to me,
“Joanne, you will never be able to achieve things that everyone else can.”
It’s been over twenty years now and I still have to remind myself ‘I’m not the same as everyone else‘!!! These days that is a large shout, to bring me back to reality, and it is touched with sadness. However it is also touched with empowerment. When I learnt how to accept that I’m not the same as my friends, that I do have to live my life in a different way, my choices opened up to me in a way they never had before.
When I was in denial it seemed as if I couldn’t give in to the illness, the way it stopped me in my tracks felt like it was already in control. When I was in pain, there was no choice. I was trapped. I didn’t want the illness to win, but it did.
The fight for choice
Yet, the fundamental reason for pain, is to let us know that something is wrong. Everytime I fought the illness I was pretending that there was nothing wrong. When I stopped fighting, accepted that there was something wrong a whole host of new choices opened up to me. I started to plan my life around what I could achieve, instead of failing at what I couldn’t.
I no longer let friends down by cancelling last minute.
I had my survival kit planed out for every day, not just the bad days.
I changed my career and the way I worked. That was a big one, the difference it made to my health switching from a full time job to a part time job was immense. My energy increased, my stress level decreased and this was reflected in a subsidence of some of my symptoms.
It was a hard decision to make, we live in a world where women fought for so long to have the vote and to have a career that not to work full time felt like a vote against women.
Yet I wish it was a decision that I had made many many years ago.
This was a win for my sanity, for my strength.
Of course there are repercussions when making a decision like this. Financial suffering is a vicious cycle for women with illness. We need money to get treatment, we need work to get money, we need to not work to rest our sick bodies. Support, financial or otherwise is a key factor in survival.
Never ask for help
Men or Women, we all fall into this trap.
Never tell anyone that you aren’t okay.
Never tell anyone that you need help.
Don’t show weakness. Do it all your own. Everyone else is coping so must I.
When I first started working as a complimentary therapist I realised that actually everybody was pretending to be fine and then going home and falling apart behind closed doors.
Women are natural nurturers . WE LOVE TO HELP. We love to be useful. So why do we deny giving that gift to those who care for us.
Battling alone is no fun. Battling alone is when that knife gets ever closer. Battling with someone holding your hand however is another thing entirely. Generally support needs to come from family especially financial support. However this can open up another can of worms.
Guilt and reciprocation
In general the whole concept of exchanging gifts is a lovely, you give me something nice, I give you something nice back.
However if you can’t give something back then it leaves you feeling icky. As if you are taking advantage of your loved one.
Of course if you feel like that, then clearly you are not the kind of person who would be taking advantage.
Living with illness has an impact on friends and family which tends to be forgotten by the sufferer. It was only when I started to understand how difficult it was for them that I realised they needed to be able to support me too.
Living with someone who is in pain or exhausted is awful. Feeling helpless, hopeless, frustrated, angry, worried and having nothing to do about it.
When I started asking for help, when I started leaning on my loved ones, that was when I won another survival battle. I also won a battle for them.
Hypnotherapy and Hysterectomy
As I adjusted to a life with pain, I started to reconnect with my ancient feminine power as a matter of survival.
There were two main treatment plans that affected me. Hypnotherapy and the Hysterectomy. There is no question that learning the art of hypnosis was the first thing that stopped me from killing myself. No drug had any impact on the level of pain that I was in.
I learnt how to enter a state of very deep trance, in this state I could remove myself from the pain signals that my body was experiencing. I still experienced a level of pain afterwards, I still lost huge chunks of time and I was exhausted afterwards, but using hypnosis did allow me to escape from the pain.
Hypnosis, Meditation and Dream States are pathways to a woman’s empowerment. Access to the knowledge of the subconcious mind, awakening the power of intuition, inner guidance and the higher self
Learning this skill not only helped my pain, but gave me a tool to survive the emotional fall out. A hysterectomy was the choice I took when I was 35. When I was so exhausted from my endless fight, from not feeling as if I was living and from a very great fear that before much longer I would give up.
But I was totally unprepared for the emotional fall out. I was in so much physical pain I was completely removed from the emotional pain that was underneath. That I would never be a natural mother, that I would never experience pregnancy. I was totally unprepared for the fact that in a complete reversal from hating myself as a woman, not having a womb I now felt that I had failed as a woman. That I wasn’t even a real woman any more.
However I had already been on a path of discovery. As a direct result of the endometriosis, I had immersed myself in the world of personal development, I had healed so much of my emotional traumas, I had looked after my body as much as I could. When this emotional fall out hit, and it hit hard. I knew what to do to put myself back together. I knew what I needed to do to find myself again.
This blog isn’t about the tools and techniques, it’s not about advocating a particular treatment plan be it medical or complimentary. It is about taking the time for you. Investing time and money into letting go of your demons, into finding the own truths of your soul. True enlightenment is understanding who you really are and how you get there.
I chose that path early because I wasn’t going to give up the fight.
I chose to look beyond what the medical profession told me my options were.
Many women don’t. Because the idea of taking a different path is more scary than living with pain.
It’s true, following a different route takes courage. But I promise, it will lift you on wings you didn’t know you had.